Experiences With Autism

Posted by Ginger, Volunteer Mentor @gingerw, Aug 14, 2022

While being on the autism spectrum, as wide as that is, we often encounter falsehoods and misconceptions that the neurotypical person may have about our situation. Often, we hear comments that may have us shaking our heads, thinking, "Really?" or, "Why is that okay to say?"

Here is a link to an article I read just this weekend, sent to me from themighty.com. I encourage everyone to read it, and think about the questions being asked. Let's see how we would answer those same questions!
https://themighty.com/topic/autism-spectrum-disorder/autistic-people-answer-questions-about-autism

@auntieoakley @mamacita @jimhd and others, please, let's start with question #1

Interested in more discussions like this? Go to the Autism (ASD) Support Group.

Ginger, Volunteer Mentor | @gingerw | Aug 14, 2022

-If I could tell the world one thing about autism, what would it be?

There are as many forms and types of autism as there are people diagnosed with it. We learn to mask our true selves, it seems, to be able to get along in this world in general. Do we want to? For me, "no" with a capital "N"! But it is how I have to be many times, in order to semi-successfully navigate daily and the interactions with others. But I am less shy about telling people now that I have Aspergers Syndrome, and those who know me even for a few minutes, and are tuned in to this, immediately know by subtle signs they observe.
Ginger

Chris, Volunteer Mentor | @auntieoakley | Aug 14, 2022

If I could tell the world one thing it would be;
I am not more or less than you, just different from you. I learn differently, I feel emotions differently, I see the same picture of life, I just see it differently. I am a unique whole person.

Mamacita, Alumna Mentor | @mamacita | Aug 18, 2022

Hello!!!!! How are you? I've been hoping and praying I would hear from you.
So much going on here.

I'll get my grandson to help me log back on to Mayo Clinic. Everything has
changed.

Love,
Mamacita

Ginger, Volunteer Mentor | @gingerw | Aug 18, 2022

In reply to @mamacita "Hello!!!!! How are you? I've been hoping and praying I would hear from you. So much..." + (show)

@mamacita I am looking forward to hearing more from you! I've missed your wisdom.
Ginger

Mamacita, Alumna Mentor | @mamacita | Aug 19, 2022

In reply to @mamacita "Hello!!!!! How are you? I've been hoping and praying I would hear from you. So much..." + (show)

Hugs and much love back. Will try to get logged in sometime this weekend.

Helen, Volunteer Mentor | @naturegirl5 | Sep 2, 2022

My stepson who is an adult is on the autism spectrum and is low functioning. He needs supervision 24/7. It makes me very, very sad that there is awareness and services for children with autism but once they become adults there is very little available. I read a research article awhile back that indicated the vast majority of adults with autism live with their parents because of unavailable resources.

This is what I would tell the world. Little kids with autism grow up to be adults. They need support from our society and culture.

Sue, Volunteer Mentor | @sueinmn | Sep 2, 2022

In reply to @naturegirl5 "My stepson who is an adult is on the autism spectrum and is low functioning. He..." + (show)

Absolutely! My grand-nephew is in the same situation - he now lives in a group home because after 20 years, my brother, his grandfather cannot handle his 5'10" 250 lbs when he gets upset. Sadly, they have tried for years to find a place that is more than a "warehouse", and it seems every time they do, management changes and the services lapse again.
We have several higher-functioning family members as well, and the only way they get help is from family - fortunately there are many of us - even my kids step in to help with things like supporting social skill development.
One of the hardest things is finding a suitable, supportive workplace, other than a "sheltered workshop." I have an acquaintance who starts teaching workplace skills to kids on the spectrum at 14, but the state ends services at their 22nd birthday - even if they are "not quite ready." These poor young adults end up living in their parents basement or a group home and watching TV. What a waste!
Sue

Chris, Volunteer Mentor | @auntieoakley | Sep 9, 2022

In reply to @mamacita "Hugs and much love back. Will try to get logged in sometime this weekend." + (show)

💕❤️💕❤️ yippee❣️

Ginger, Volunteer Mentor | @gingerw | Sep 10, 2022

The second question in the article I referenced at the beginning of this discussion is this:

What were some things (behaviors, thoughts, feelings, symptoms) that you were surprised to learn were related to autism?

For me, the depression and anxiety issues many of us relate to. Then again, thinking about how we have tried to fit in and understand our unique situation, it is too far-fetched to lean towards the depression and all.

What's yours?
Ginger

Chris, Volunteer Mentor | @auntieoakley | Sep 11, 2022

When I was finally diagnosed, I found out why I walked on my toes when I was young. I don’t anymore due to extreme disapproval from family, but I found it interesting to know.
I learned about stimming, no I don’t do this just to annoy others. Lol
I was surprised to learn that hyper focused learning isn’t really unique.
I am not the only one that tunes out everything while I consume every available scrap of information I can find about a topic before moving on to the next. My head is full of useless information. Hahahaa . I am really good at trivia.
I was surprised but happy to understand many of the ways I interact or don’t interact with others. In the years since, I still struggle with giving myself permission to participate differently or not at all.
Anyone else have these?

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